Friday, July 17, 2015

Special Needs Spotlight || Della



Hi--We’re Caitlin and Chad. We’ve been married since 2001. In 2008 we left our homeland of Orange County, California to start a new life in Houston, Texas. Caitlin likes hot yoga, Downton Abbey, and sugar in all its forms. Chad likes running, watching “Cops”, and working on his amazing front lawn. Our son Archer is 11 and he likes listening to dubstep, playing Minecraft, and learning how to be Steve Jobs. Our daughter, Della Belle is 8 and is one of thirty-ish children with a rare genetic mutation of the ASXL3 gene. She likes her school bus, fans, and watching Russian cartoons. Somehow we missed the memo about going to college straight out of high school so we are now currently both students at the University of Houston. Chad is working on a business degree and Caitlin is a senior about to apply for graduate school to become a speech pathologist. We’ve been self-employed for over 10 years.

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Miggy: Hi Caitlin and Chad! Thank you so much for being here today and sharing your sweet family with us. Also, I LOVE hearing from both mom and dad in this interview--this is actually a first but lets hope it catches on! So lets start at the beginning, can you take me back to the day you knew your daughter would have special needs?  Was this during your pregnancy with a routine ultrasound, shortly after birth or sometime after that?  Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Caitlin: Della was developing slowly and I had this nagging suspicion that something was wrong but my pediatrician always brushed me off (always listen to your "mom gut"!!!) When she was 8 months old I got a second opinion. I remember exactly where I was and what I was doing when the doctor called and told me that Della had some serious medical issues and that they were life threatening. Everything stopped at that moment. My life felt over and I was absolutely powerless to change it. The next day was the 4th of July and as I sat surrounded by families laughing and having a good time, I felt angry. I wanted to shout “How dare you laugh and have a good time in front of me! Don’t you know that my baby is sick?!?!” It was weird knowing that just because my world had stopped, that didn’t mean that the rest of the world was going to stop and mourn with me; and that’s exactly what it was: mourning. I mourned the child I thought I had and the future I had imagined with her. I think it’s something that parents of a child with special needs has to go through many times throughout their lives: re-accepting that what you thought was going to be, is not what actually is.

Chad: This is something I remember well. When you have a child, you spend a lot of time planning out their future in your mind. Sure, it’s not this detailed schedule of milestones and accomplishments, but you definitely have this vision of what it will be like when they go off to school for the first time, or when they go to prom, or graduate from college… So when we found out about Della, it seemed like we’d lost a child; like the life that you assumed would exist was dead and replaced with this blackhole of nothingness. And as Caitlin said: the sadness of that lost life feels like mourning.


Caitlin: In the beginning I compared her with other kids her age, and that was painful. But as time has passed, I’ve learned to see Della for exactly who she is and I accept where she is at. I don’t see Della as an “eight year old girl”, I just see her as Della and that perspective is very liberating. Occasionally I am reminded of what “might have been” and I feel sad; but most of the time, Della is just Della and our life is just our life.

Chad: Once the other kids were just so far ahead, it stopped being this constant reminder of how your child isn’t progressing normally; but she just became her own category. And within her own category, she’s doing just fine.

Caitlin: The other difference between how I feel now and how I felt in the early days of Della’s diagnosis was my conviction that I would never be genuinely happy the way I was “before.” Grief is a very heavy emotion and at that time and I was sure the sadness was permanent. It is somewhat true that I’m not happy exactly the way I was before Della’s diagnosis, but I’ve traded that naive happiness that I see in newlyweds or first time parents, for something more substantial. I can appreciate the good moments because I have been through the sad. *Pretty sure that’s the exact plot of Pixar’s “Inside Out.” The beginning was hard but like the people at the park showed me, life doesn’t stop no matter how much you feel like it has. Slowly the happy moments began to outnumber the sad.

Chad: Life definitely has a much broader depth of emotions than it had before Della. I see other couples deal with their problems by going on vacation or by remodeling the kitchen. Many parents of disabled children will tell you, those aren’t options for us. So without the means to ignore our problems with a cruise, we’ve been forced to deal with our personal and marital issues--all the while, learning how to care for a child with disabilities. I feel like this experience has brought us to depths of sadness and heights of joy that we might have never experienced had Della not come into our lives; which ultimately, has brought us closer together as a couple.


Miggy: In your email you explained that your daughter's diagnosis was only recently named--Bainbridge-Ropers Syndrome--and that she was the 4th person in the world to receive this diagnosis. You started an online support group for other BRS families, which the current tally is 22 families worldwide. Uh--that's not a lot people!  So none of us are ever prepared for a disabled child, BUT in addition to the typical fears your family also had the extra stress/worry/burden of a disability that was so uncommon you had no road map so to speak and very little support.  First please educate us about Bainbridge-Ropers Syndrome-what are the traits and hallmarks of this syndrome? Second, please tell us about this special needs journey as it pertains to having a child with an extremely rare condition. I would assume you are as much an expert as any doctor in regards to your daughter and her condition.  Also, how has it been to be the touch point for other families who are walking this road--knowing that you didn't have anyone to reach out to for support when she was first born, has this support group been cathartic for you by providing the support you didn't initially have?  

Caitlin: We spent the first 6 years of Della’s life not knowing what she had. We had narrowed it down to an unknown genetic issue but that was it. After every test came back negative we felt both more relieved (“Thank goodness it’s not that one!”) and less relieved (“But if it’s not that then what is it?”). It’s very unsettling to not have a diagnosis: something is wrong, you just don’t know what it is. “Unknown diagnosis” became Della’s diagnosis, if you will.

Chad: In those early years, I think we made the mistake of dividing up the stress: Caitlin took over the stress of finding a diagnoses for Della - which was costing us loads of money, while I worried about how we were going to pay for it all on top of keeping our house. In many ways, while our main goal was the same (help Della), our day-to-day goals were very contradicting (spending on medical vs. keeping food on the table). This parceling of stress had very negative consequences on us both, because I think we both felt alone with our fears. Moreover, we both felt like the other person didn’t care.

Caitlin: With the recession and all of our savings gone from medical expenses, we knew we had to move out of California. After a lot of research we felt that if we ever found a diagnosis for Della, it would be at Texas Children’s Hospital (TCH)/Baylor College of Medicine (BCM) in Houston. When we met with the specialists at the TCH/BCM genetics clinic the doctor excitedly told us “We will have a diagnosis for Della when she is a young adult.” The next year he said that things were progressing and that maybe we would have answer by the time Della was 12. The year after that I was contacted by the genetics clinic asking if we would like Della to participate in their pilot program for sequencing her entire genome. Ummm...YES!!!!!

In August 2012 we got the call that they had found something. The good news was that they had discovered that Della had a mutation of the ASXL3 gene. The bad news was that they had no idea what that gene did. So we went from unknown diagnosis to ASXL3-but-also-unknown diagnosis. Coincidentally (or Divine Interventionally) the doctor who had isolated and was studying the gene, Dr. Bainbridge, worked in the very same office! We met Dr. B and we signed Della up for his study. At that time there were four children (including Della) who had been identified with ASXL3 mutations. Fast forward to 2014 when Dr. B contacted me to say that there were a few more children who had been diagnosed with ASXL3 mutations (recently named Bainbridge-Ropers Syndrome) and asked if I would be willing to become a contact person for families of newly diagnosed kids. I immediately knew that I was completely unqualified and I also knew I had to say yes. Until that time, we were totally alone in managing Della’s symptoms so the first time I talked to another parent of a BRS child was an incredible experience. Excessive laughing? Mine too! Fascination with water? Mine too! Stevie Wonder head shake? Mine too! We were no longer alone.

Chad: Yeah, this was a neat experience. It’s one thing for you to say, “My kid does x and y.” and for them to reply, “Mine too!” But it’s another thing when they say, “My kid does A and C.” And you realize that your kid does the exact same thing. It really was thrilling because finally there was someone else out there - someone else who knows exactly what your life is like.

Caitlin: There are several studies that are working to better define BRS/ASXL3. Today we have about 22 families in our Facebook group who have an ASXL3/BRS diagnosis. Like most diseases, there is a spectrum of symptoms but hallmarks include feeding tubes, no speech, low muscle tone, sleeping issues, poor eye contact, and impaired mobility (about half of the kids can walk). All of the children have intellectual disabilities. Some of the more unique aspects of BRS are excessive laughing, a peculiar head shaking “stim” (that looks similar to the way Stevie Wonder moves his head when he is playing the piano), and a strong fascination/preoccupation with water. We don’t yet have a firm prognosis about what the future holds for these kids and that’s a difficult reality for all of us.

Chad: The question “What will adulthood be like?” is one of those questions that’s on everyone’s mind, but is rarely discussed openly within the group. Whenever I hear about a new child being diagnosed, that’s one of the first questions I ask Caitlin: “How old are they?” As Caitlin mentioned, the oldest diagnosed child is in her late teens. It does bother us that we haven’t found any adults with BRS - we have theories as to why, but really the theories are just things we tell ourselves because it’s better than assuming that BRS kids don’t make it to adulthood.

Caitlin: Running the group has been very cathartic. By the time parents contact me, they already know their child has some disabilities so that initial shock is over. But receiving a diagnosis after what is usually years of searching, is still very emotional. Being available to families has given my experience and my struggle so much meaning. I try and always be the contact I wish I had had when Della was diagnosed.


Miggy: Della is 8 years old, how do her needs affect her and your families day-to-day life?  Has this changed over time?

Caitlin: Della is 8 and depending on the area, she functions between 18 months to 3 years old. Her expressive language is extremely low but her receptive language abilities are much higher. Della has a few signs that she made up herself but her impaired fine motor abilities means sign language is not an option. She has a touch screen speech device and she was able to do some basic communication with it, but one day she rejected it for some unknown reason. She wears ankle-foot orthotics and can walk very slowly so we always use her wheelchair when we plan on doing some longer periods of walking. Della is half potty trained and she does #2 on the potty but we’ve been working on the #1 part for five years. But, if I had to pick which half was potty trained, I would definitely choose #2! She started attending special education classes when she was three; and up until recently she had multiple weekly occupational, physical, and speech therapy outside of school. Also, Della is the cutest thing I’ve ever seen in my entire life.

Chad: I truly feel that she will be able to communicate with us some day. I think that she doesn’t like the communication program because she’s not capable of programming it herself (we’re barely able to do it). Della wants to talk about Monster High, and how she wants to eat the new cereal that she saw on a commercial. The variety of all she wants to say is so much more than a simple program is capable of doing - so she rejected it. I think that she’ll get there, but it will be when she realizes that reading and writing is the key. Because as Caitlin said, her fine motor abilities make sign language practically impossible.

Caitlin: As far as self care, we do a lot of the work. We spoon-feed Della, bathe her, dress her, and carry her up and down the stairs (why oh why did we get a house with stairs?!?!). Although Della’s progress has been painstakingly slow, she has never stopped learning and developing.

Chad: It’s the small accomplishments that keep us going. Just this morning Della was asking for a new fan (at least, that’s what I could gather), and I asked her, “A new fan? Who wants a new fan?” And Della raised her hand. It seems so small, but it’s communication. I asked a question, and she responded; which is huge compared to where we were just one year ago.

                                                                  
Miggy: What are the biggest worries you face for Della? Alternately, are there hopes and dreams you have for Della that you didn't used to have? I don't usually ask that second part of the question, but since Della is a little older, I'm curious if you've seen changes in either herself or even the world/technology that have since given you more hope?

Caitlin: Worrying is pretty much my hobby--a craft I have skillfully honed for 33 years. I have staple worries that are pretty universal: Who will take care of her if we die first?; Ehat will happen if she dies first?; What if I miss symptoms of a serious health threat? I worry about money ALL THE TIME! I worry about someone hurting her and she can’t tell me; I worry that I will never get to see the world or even get a few nights away; I worry that sometimes I don’t want any nights away. Then I have my more random worries like her falling off a cruise ship (even though we have no plans to go on one) or if we take her to Disneyworld when she’s 40 and we aren’t strong enough to keep her from bolting off Pirates of the Caribbean.

Chad: It’s weird, because you grow up in a family with siblings so generally you sort of know what to expect and what to be worried about. So when Della was born, we worried about stuff like: Is she going to kind to others, rebellious, a good student, a teen mother...all of the usual fears that parents of daughters have. After the diagnoses, there were a few conversations where we were able to let some of those fears go. But then we started educating ourselves about raising a disabled child--especially a daughter--and a lot of those fears came back but a lot stronger. You hear stories from other parents--horrible stories--about the abuses: physical, sexual, etc., that are committed on mentally disabled children, and your heart sinks.

Caitlin: My dreams for Della have definitely grown as she has progressed but I tend to be more cautious in my hopes. Chad is usually more optimistic than I am and that’s just another reason I love him so much. I try to find the balance between acceptance of where Della is at now and hope for where she could potentially progress to. That’s one upside of having a disease no one knows anything about; you can never say for sure what she will be able to do. No matter what the experts say, there is always hope.

Chad: I do tend to be more optimistic. But as Caitlin said, it’s cautious optimism--optimism based on empirical evidence. After mourning the life that we lost to the disorder, there was a period of time where I don’t think we thought too much about the future--as we were so caught up in the stress of the moment. We’ve since moved past that, and have allowed ourselves to project our hopes out further than just a few months. I think for me, my hope for Della is the same as it is for my son or my wife: that they’ll have a life full of happiness and joy. How they choose to do that, is up to them; and I’ll be there to help.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Caitlin: Humor is the only reason we have made it this far! Besides his dashing good looks, my husband’s sense of humor is what attracted me most to him. Life with kids is pretty funny but with Della it is especially so. I started posting pictures of Della’s antics on Instagram and hashtagging them #DellaProbs. Not sure if people find them hilarious or disturbing. I personally think she is the most adorable thing I’ve ever seen but I am also her mom so...

Here are some funny quotes (Feel free to edit anything that is too crass for your blog. My family tends to err on the side of inapropro.):

Me: Let me call you back, I’m almost done laminating the new American Girl catalog.

Chad: I deleted it from the youtube history but she somehow keeps finding that prostitute cartoon.

Me: I’m sorry Della ate her library book Mrs. Wisemann. She just really loved it.

Archer: I’m pretty sure Della thinks the light pole is her boyfriend.

Chad: Della’s new hobby is putting plastic bags over her head. You really have to keep a close eye on her.

Archer: Mom! Della somehow got a knife and she’s stabbing the watermelon on the sink!

Me: Just fair warning, my daughter loves to lay on people’s boobs.

Archer: No no Della! Stop staring at the sun!

Chad: If you lick the shower floor again, you’re going on time out!

Chad: Oh, sorry my daughter lifted up your shirt, she’s been doing that to everyone after she saw a belly button piercing.

Chad: I can never tell if Della has to poop. Ask Caitlin, she’s like the poop whisperer.

Chad: In many ways, Della is trapped in her body. Moving around takes a lot of work, so she primarily just sits on the couch with her iPad; which can be boring and monotonous. We’re not capable of entertaining her at all times, but we are capable of making what time I do spend with her enjoyable. I think we’re really good at diversity of typically mundane activities, along with unexpected humor--and singing--and I guess, dancing too. Caitlin is a lot of fun to be married too, and is very good at making life fun and unexpected. Sometimes we’ll just break into improvised songs about normal day activities--as though we were in a musical--and Della won’t even be phased by it. Like, in her mind she’s thinking, “Nothing unusual here.” Usually though, she’ll get up off the couch and want to dance too--like how for some reason, the other night we all started dancing when the Cops theme song came on. Of course, we were all just trying to make each other laugh, and Della ate it up.


Miggy: How can people best approach or respond to Della? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Caitlin: I would say a good rule would be to avoid criticism. We are doing the best we can, even if our kid has eaten only popcorn for the past five meals. Also, I try and remind people that there was a time before I had Della and I felt awkward and unsure about how to respond to someone with a disability. Now I prefer people ask questions instead of awkwardly avoiding. I think sometimes people are afraid of hurting my feelings by bringing it up but here’s the thing: I already know Della has disabilities.This isn’t news to me. If you ask, I won’t suddenly be reminded that my daughter has a genetic disorder and then burst into tears. So ask away!

Chad: There are definitely people who stand out to me because they ask about my daughter; which is nice because most people avoid the conversation. I also understand that I’m capable of talking about my daughter like cat owners talk about their cats. So I try to keep it simple: a few sentences. If they want to know more, then they’ll ask.


Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son/daughter?  As you mentioned in your email it can be hard being the sibling of a special needs child--what do you do to try and counter some of the imbalances that naturally occur?

Chad: Our time is limited and our daughter requires an unfair amount. And it’s not just our time, but it’s also our patience. And so when we do have interactions with Archer, it does tend to be limited in time and lacking in any degree of patiences--which is completely unfair. Therefore, he does have every right in the world to resent his sister and hate her, but he doesn’t. In fact, I’m often in awe at the kindness our son has for his sister. I’ve never once seen him hit her, or lash out at her. I’ve never seen him angry at her--frustrated, yes, lots of times--but never angry like kids can get. And it hasn’t always been easy: she’s gone through some pretty horrible stages--like when she was latching onto people’s hair and laughing hysterically as they tried to pry her fingers open, usually screaming. I have a lot of reasons to be proud of my son, but I’m most proud of the kindness that he shows his sister.

Caitlin: Archer has the weirdest life. He’s half only child and half neglected. Della doesn’t talk so Archer gets that part of us all the time. And I can assure you that he takes full advantage of that. He never stops talking. Ever. On the flip side, I have to constantly brush him off because I’m suddenly in Della crisis mode. We were his Cub Scout leaders for the past three years and that was something special we did with just him. Archer is so patient with his sister. Still, I am prepared for the day when he might say that Della embarrassed him or that he feels resentful that she gets so much of our attention. Validation is so important for kids and we invalidate their feelings all the time (“You can’t be hungry, you just ate!”, “Quit crying, people have it so much worse than you!”, “Shame on you for saying you’re embarrassed of your sister! She can’t help it!”) I want my son to know that the feelings he has are normal and not “bad”, it’s how we handle those feelings that we can sometimes go wrong. The Power of Validation: Arming Your Child Against Bullying, Peer Pressure, Addiction, Self-Harm, and Out-of-Control Emotions by Karen Hall. Game changer ya’ll, Game. Changer.




Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Della's mom and dad?
Caitlin: I have learned that I am so much stronger than I ever thought. If I could heal Della, I would do it in a heartbeat for her sake. But if it were for my sake, I wouldn’t change anything. I didn’t think I was capable of running a parent support group, or being involved in pioneering research for a genetic disease, or able to deadlift 60 lbs. At 30, I returned to school to become a speech therapist. I never thought I was smart enough to go to college. Yet here I am, at the top of my class preparing to apply to graduate school.

The most painful lessons I’ve learned have been in my relationship with Chad. Being married with a special needs child is extremely difficult. If not for Della, we would have probably carried on in a mediocre relationship because neither of us would have worked to overcome our issues. Della was like throwing a spotlight on our unhealthy behaviors and every weakness became magnified. We needed to be more unified and able to ask for help and to share the financial and daily care burdens of our daughter. Instead Chad suffered for years carrying the financial stress of crushing medical bills and at one point he worked the night shift loading UPS trucks on top of his regular job. He never felt like he could come to me and say “I’m scared we could lose the house.” I had the burden of caring for Della which included hundreds of appointments, decisions about her medical/educational needs, and endless cleaning up of bodily fluids. He didn’t bring it up for fear adding to my stress and I thought he didn’t care because he didn’t talk about it. Together we had a daughter with special needs but we faced it alone. Loneliness and avoiding painful emotions breeds toxic coping behaviors and I didn’t think our marriage would survive. As embarrassed as I feel about admitting this in public, it took a lot of intense therapy, painful realizations, and the hardest work I’ve ever done to save our relationship. My marriage today isn’t perfect but it is so much better than I thought it ever could be. I hope that our story can help other parents experiencing the same thing. Things can get better, even in the worst situations.

Chad: Honestly, I think that the biggest lesson I’ve learned, is that I have lots of faults: I was jealous of those around me who didn’t have disabled kids; I was prideful and ashamed when I had to give up money and possessions to pay medical bills; I was quick to highlight my own contributions to the family and slow to acknowledge all that Caitlin was doing...Had Della not come into our lives, I could have probably hid a lot of these poor attributes for years--perhaps my entire life. Caitlin always says that having Della was like placing a magnifying glass over our shortcomings. If it wasn’t for Caitlin’s patience, love, and support, I would have self-destructed many times over.

Caitlin: Awwww! That’s so sweet! The same is true for Chad and I appreciate all his love and support. I’m so glad neither of us was at our worst at the same time. It’s something really special when someone knows all your faults and who has seen you at your lowest, and they love you anyway.

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Caitlin and Chad that was amazing.  First, I really loved the openness both of you shared in regards to your relationship and how having a daughter with special needs has tried that relationship, but ultimately strengthened it. I especially found it enlightening when you talked about both of you shouldering different burdens but not really communicating about it, therefore leaving you feeling totally alone. There are probably a lot of special needs parents out there nodding their heads, totally understanding what that feels like. I was also moved with the absolute honesty you shared in regards to your son Archer and how he basically gets the short end of the stick a lot. It's a hard truth a lot of families have to live with. He also sounds like a terrific kid. Lastly, your funny quotes had me laughing out loud! So great. And so great you both find each other so fun and funny. You guys are awesome. I'm so glad you both participated today. Best of luck and big hugs to your whole family. You're kicking some serious special needs family ass! (If you get to say boobs, I get to say ass.)

Once again I'm just in awe of these families I'm lucky enough to feature.  Please, please email me if you or someone you know would like to participate in the special needs spotlight.  Email me--or have your friend/family member email me--at thislittlemiggy at gmail dot com.

Have a badical weekend!



10 comments:

  1. I personally know this family and love them to pieces! ♡ They truly are just as awesome as they sound!

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  2. I personally know this family and love them to pieces! ♡ They truly are just as awesome as they sound!

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  3. I am in love with this family. I like to pretend life is a musical too!

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  4. Love the honesty and the attitude! Very nice to hear from both parents. Thanks for sharing your story!

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  5. This interview mirrors my thoughts and feelings almost exactly. The mourning, the jealousy and pride, the shame at feeling jealousy and pride, the harsh light shining on all my flaws, the desire to take away the disability but not to go back to my naive former self, etc. Thank you so much for taking the time to share. It made my day.

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  6. And your daughter is beautiful!

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  7. Anonymous10:13 AM

    Many thanks to these two parents for talking about the detail.

    We have a special needs child as well.

    I don't feel the jealously, but I do experience each parent shouldering their responsibility and then maybe not sharing their thoughts. I have heard other parents in our situation will go to a counselor and the counselor helps them work on goals together outside the sick child. We haven't done this, but I think it would be amazing.

    Thanks again for this column and to these particular parents.

    Reading words help me.

    Thanks

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  8. Bailey8:38 AM

    This was an amazing spotlight- thank you so much for sharing. I loved their honesty and humor. A beautiful family, inside and out.

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  10. This whole interview was amazing, but I really want to let you know that "inapropro" is going to become my new go-to word.

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